Quality of Life

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The articles in this supplement present recent advances in the measurement of patient-reported health-related quality-of-life (HRQOL) outcomes. Specifically, these articles highlight the combined efforts of the National Institutes of Health, National Institute for Neurological Disorders and Stroke, National Center on Medical Rehabilitation Research, National Institute on Disability and Rehabilitation Research, and Department of Veterans Affairs Rehabilitation Research and Development Service to improve HRQOL measurement. In addition, this supplement is intended to provide rehabilitation professionals with information about these efforts and the implications that these advances in outcomes measurement have for rehabilitation medicine and clinical practice. These new measurement scales use state-of-the-art method techniques, including item response theory and computerized adaptive testing. In addition, scale development involves both qualitative and quantitative methods, as well as the administration of items to hundreds or even thousands of research participants. The scales deliberately have been built with overlap of items between scales so that linkages and equivalency scores can be computed. Ultimately, these scales should facilitate direct comparison of outcomes instruments across studies and will serve as standard data elements across research trials without compromising the specificity of disease- or condition-targeted measures. This supplement includes the initial publications for many of these new measurement initiatives, each of which provides researchers and clinicians with better tools for evaluation of the efficacy of their interventions.
Definitional issues that affect the measurement of quality of life (QOL) in health care research are discussed. In reviewing a broad sample of health- and disability-related QOL studies, the authors note several characteristics in which respective approaches to measurement differ: (a) In various measurement tools, QOL has been located either within the insider's (i.e., the person being measured) judgment of the 'goodness' of his or her life or outside this judgment. (b) The insider's and/or outsider's values may hold sway in deciding the elements of life that are relevant to QOL within the measurement process, and in rating the degree of 'goodness' of these life domains. (c) QOL models incorporate domains of items varying in breadth and specificity; and they take either a negative or neutral view of functioning. (d) QOL models vary in their complexity, type of linkage between components, and inclusion (or not) of both the insider's judgment and external predictors of QOL. These distinctions are used by the authors in recommending approaches to QOL measurement suitable for health care research aimed at outcome assessment and description of populations.
Quality of life (QOL) and health-related QOL (HRQOL) instruments abound in the health care literature, but many appear to measure nothing more than what in previous decades was called health status. As such, they fail to include numerous domains of life that are salient to many people, they omit items tapping into meaning and feelings of well-being, and they do not allow for individualization to take into account personal preferences. Based on a conceptualization of QOL and a corresponding 2-dimensional scheme for classification of instruments, several measures published in the literature are presented that allow for subject selection of domains, specification of standards and aspirations, and/or report of subjective reactions to status on various domains. The advantages and disadvantages of standardized versus individualized instruments are discussed, as well as methodologic questions with respect to the latter that future research needs to address.
Measurement and assessment, occurring within both research and clinical service contexts, typically involve an imbalance of power between professionals and persons with disabilities. Power is evidenced in who controls decisions about measurement and whose perspective--the subjective values of the measured person or the objective or normative values of the measurer--is given primacy. The consequences of this imbalance are discussed with respect to both sides of the power relationship. For clinicians, evaluators, and researchers, who typically hold most, if not all of the power in measurement, the process may produce data that meet the highest professional standards. However, the utility of such data is limited in addressing many purposes. For research participants and service recipients, who typically have little if any control of measurement, the measurement process may be disempowering, because measures focus on areas of life that may be of little relevance to what they see as important. In effect, both sides lose, to the degree that resulting data are less revealing than would be the case in a more balanced power relationship. Methods are discussed for reducing power imbalances to improve the utility and efficacy of measurement.
Quality of life (QoL) is increasingly becoming a key concept in research and clinical services. However, no agreement exists on what QoL is and how it is to be measured. This paper reviews three different yet linked approaches to QoL conceptualization: QoL as subjective well-being; QoL as achievement; and QoL as utility. People with spinal cord injury (SCI) tend to report fewer feelings of well-being, on average, than nondisabled persons; score lower on physical, mental, and social health and in other domains of life that people consider important to life quality; and have a health state that is preferred much less than that of the average person. Many QoL instruments used in SCI research have not been validated for this group, or have questionable assumptions, and clinical applications of QoL measures still have many problems. Much SCI QoL research tends to be atheoretical.
Over the past decades, the concept of quality of life has been of paramount importance for evaluating the quality and outcome of health care. Despite its importance, there is still no consensus on the definition or proper measurement of quality of life. Several concept analyses of quality of life have been published. However, they appear to have had a rather limited impact on how empirical studies are conducted. Therefore, we present an overview and critique of different conceptualisations of quality of life, with the ultimate goal of making quality of life a less ambiguous concept. We also describe six conceptual problems. These problems were used as criteria to evaluate the appropriateness of different conceptualisations. This evaluation suggests that defining quality of life in terms of life satisfaction is most appropriate, because this definition successfully deals with all the conceptual problems discussed. The result of our concept evaluation was not surprising for it corroborated the results of several concept analyses and the findings of a structural equation modelling study. Based on the findings revealed by our review, we propose that the scientific community should revitalise the conceptual discussion on quality of life. Furthermore, our findings can assist researchers in developing more rigourous quality-of-life research.